Kiara's story

Nine-year-old Kiara came to RNOH for help with scoliosis. Her diagnosis was part of a much bigger journey for Kiara and her family. Here, she tells us about her experience and why she supports RNOH Charity.

“Doctors have looked after me since I was really little because I have something called Agenesis of the corpus callosum (ACC), which means a part of my brain is a bit different,” Kiara explains. “ACC causes my muscles to be really floppy, which is called hypotonia. Because of all the appointments and check-ups I've had, neither I nor my parents can really remember the exact moment a doctor first said the word scoliosis. It was just one of the many things we were dealing with!

"As I got older, the scoliosis – the bending of my spine – became really obvious from the outside. That's when we knew we had to do something big. We started noticing that there was a visible curve or deformity in my back, and that’s what finally brought us to the super specialist Royal National Orthopaedic Hospital (RNOH) to get a plan to fix my back and make sure I could stand up tall and strong.”

Kiara says both she and her parents were quite worried at first and it took time to work out the best way to move forward with her treatment. The family were put under the care of RNOH Consultant Mr Julian Leong and a plan was decided. “My parents were instantly confident that Mr Leong was the surgeon for the job!” Kiara says. “I was a little bit nervous about being in the hospital but I thought of it like a fun, weird adventure and tried to be strong and brave the whole time.”

After her surgery, Kiara needed to spend five weeks away from school to recover. “It was a pretty big change for everything,” she says, with a staggered return planned where Kiara goes back now and again so she doesn’t get too tired. “My school has been really kind,” Kiara adds. “I’ve been to visit just to see my friends and had a fun video call with the whole class.”

The family has had to make changes at home to help Kiara sit and move around comfortably so she can heal properly. Her parents also need to manage their work and have made adjustments to life but it’s coming together and everyone is focused on getting Kiara better.

What treatment did Kiara have at RNOH?

Kiara had spinal surgery to insert growth rods. Kiara explains that this helps keep her spine straighter while she grows. She will go back to RNOH about every six months for the next four to five years to have the rods lengthened. When she has just about finished growing, Kiara will have spinal fusion surgery to complete her treatment.

Why did doctors decide on that treatment?

“The doctors said the curve in my back was 81 degrees, which is very big,” Kiara says. They decided that growth rods would work best, with a staged treatment plan to make sure she could stand, move around easily and keep growing properly.

Kiara stayed at RNOH for six days. “It felt like a long sleepover!” she remembers. Her recovery went well and she was given the all-clear to go home. She says she’s an outpatient now, meaning she comes back for check-ups and for the rods to be lengthened. “I’m doing really, really well and already feeling much better,” Kiara reports. “I am careful and do my exercises but my back is straighter and I feel stronger. I’m happy to be back home, seeing my friends and being me.” Kiara says she loves spending time with her family and her dog, Loki. She also loves drawing, reading and playing Roblox.

Doctors originally told Kiara they weren’t sure whether she would be able to walk but three years ago, she surprised everyone and took her first steps. Starting her spinal treatment is another milestone. Kiara hopes to get back to swimming, dancing and going on bike rides when she is better.

Time at RNOH

“I think the hospital people are the kindest in the whole world!” Kiara says. “The nurses and doctors were so sweet and smiled all the time. They made me feel safe and they were really good at making sure I didn’t get bored. They cheered me up whenever I felt a bit down. I loved them!”

Kiara’s parents took turns sleeping on the sofa beds that RNOH Charity provided when fundraising helped to build and furnish all the wards in The Stanmore Building – “which they said were surprisingly comfy!” Kiara tells us. “It was so nice to know that when I woke up, either Mum or Dad was there.”

“I want to say a huge thank you to RNOH Charity for a few things,” says Kiara. “First, for the play area on the ward. I used some of the toys but I loved the projectors the most – they put pictures up on the wall and I could play games with them without having to get out of bed too much. It was such a fun distraction, it helped me forget I was even in the hospital! The scanners that RNOH Charity provided are also really fancy and cool. I’m so glad they have them because it gives the doctors the best information to be able to treat me and others better.”

What's next?

Kiara has started a YouTube channel, @MyScoliosisJourneyKiara, to help other children who will be going through a similar experience. “I want to show everyone that it’s ok to be scared but you can still be happy and brave,” Kiara says, explaining that the channel is like a video diary. “It’s going great; lots of people watch and write nice comments. If it helps even one other kid feel less worried about their surgery then that makes me super happy.”

Thank you for telling us your story, Kiara.

Kiara is supporting our Big Give Christmas Challenge - donations doubled!

Kiara is helping us with our Big Give Christmas Challenge from 2-9 December 2025.

For one week only, every donation you make will be doubled until we reach our target. It’s a wonderful opportunity to raise funds to help Kiara when she comes back to RNOH and for all the other children who come in.

Donations must be made through the RNOH Charity page on the Big Give website. If you’d like to help and to see your donation doubled this week, please click below!